Longitudinal Analysis of Patient-Reported Outcomes From an Interdisciplinary Pediatric Pain Rehabilitation Program for Children With Chronic Migraine and Headache.

BACKGROUND: Many children suffering from chronic headache and migraine present with comorbid functional disability, including physical, social, emotional, and academic activities. For children severely impaired by headache, intensive interdisciplinary pain rehabilitation treatment (IIPT) can improve functioning. However, there are limited data evaluating children's response to rehabilitation across several time points. OBJECTIVE: This study aims to evaluate the trajectory of recovery for children undergoing IIPT for chronic headache, as well as to examine the proposed assumption that physical and psychosocial functioning improves prior to a reported reduction in pain. METHODS: A retrospective analysis of patient-reported outcomes in a clinical database of 135 children admitted to an IIPT program between the years 2008 and 2014 was analyzed. Available data across 5 separate time points (up to 1-year post-discharge) were reviewed. RESULTS: One hundred and thirty-five children of mean age 15.2 (SD = 2.2) and 74% female provided data for review. Linear mixed model demonstrated a statistically significant improvement in pain-specific measures of functioning, including daily functioning (change estimate = -14.53) emotional functioning (change estimate = -14.63), family functioning (change estimate = -5.78), and school absences (change estimate = -11.47) over a 12-month period (all P's ≤ .01). A more general measure of quality of life improved during the program, based upon child (change estimate = +10.07) and parent report (change estimate = +15.31); although these gains did not continue to improve post-discharge. As expected, although children did not report a reduction in pain during rehabilitation (change estimate = +0.07), they did report a significant drop in perceived pain in the 12 months following discharge from the program (change estimate = -2.12, P ≤ .01). CONCLUSIONS: Children with chronic headache and migraine who are severely functionally impaired demonstrated linear improvement in pain-specific patient-reported outcomes over time; however, there remains a need for improved methodology in analyzing response to IIPT programs.

Easily Administered Patient-Reported Outcome Measures: Adolescents' Perceived Functional Changes After Completing an Intensive Chronic Pain Rehabilitation Program.

OBJECTIVE: To determine whether patient-reported measures would be clinically sensitive and useful for identifying functional change within an intensive chronic pain program setting by examining 2 patient-reported measures administered as part of physical and occupational therapy for chronic pain. DESIGN: A retrospective data analysis of children and adolescents with chronic pain treated over a single calendar year. Paired t tests evaluated change in perceived function measures and pain over time. Standardized residual change scores were used in subsequent regression to assess associations between change scores. SETTING: An interdisciplinary pediatric pain rehabilitation program that supports children and adolescents with chronic pain by increasing strength, flexibility, and endurance; facilitating a return to daily life activities; and using appropriate self-directed coping and pain management skills. PARTICIPANTS: Children and adolescents (N=109; age range, 8-19y; 83% girls) with various chronic pain diagnoses who were admitted to a 3- to 4-week intensive pain rehabilitation program. INTERVENTIONS: Participants were involved in physical and occupational therapy for 3 hours daily, as well as recreation therapy, psychology, school, aquatics, art therapy, and music therapy for a total of 8 hours daily. Parents were involved in parent education with therapists from all disciplines in conjunction with their child's programming. MAIN OUTCOME MEASURES: Lower Extremity Functional Scale (LEFS), Upper Extremity Functional Index (UEFI), and self-reported pain severity rating on 0-to-10 numerical rating scale. RESULTS: Data demonstrated significant gains in LEFS and UEFI during the program. Improvement in perceived functioning was significantly correlated with a reduction in pain. CONCLUSIONS: The LEFS and UEFI provide a meaningful way to track progress in chronic pain rehabilitation. Using self-perceived measures, children and adolescents noted significant functional improvement, associated with less pain intensity. These findings increase our understanding of the rehabilitation process and point to goals for clinical improvement.

The Cost-Effectiveness of Intensive Interdisciplinary Pediatric Chronic Pain Rehabilitation.

OBJECTIVE: Examine the cost-effectiveness of a 3-week interdisciplinary pediatric chronic pain rehabilitation program. METHODS: Self-reported health care utilization and parent missed work of youth with chronic pain (n = 127) at admission and 1-year follow-up were compared. Financials were calculated from program revenue and established national costs for health care and wages. RESULTS: Data indicate significant reductions in days hospitalized, physician office visits, physical/occupational therapy services, psychotherapy visits, and parental missed work. Estimated health care expenses were $61,988 in the year before admission and $14,189 in the year after admission (-$58,839). Estimated cost of missed work was $12,229 in the year prior and $1,189 in the year after (-$11,039). CONCLUSIONS: Comparing estimated expenses before ($74,217) and after ($15,378) minus program costs ($31,720), yielded estimated savings of $27,119 per family in the year following admission. These findings extend the benefit of the program beyond clinical improvement, to outcomes important to both families and insurers.

Improving pediatric compliance with EEG: decreasing procedural anxiety and behavioral distress.

Behavioral distress in EEG can be a barrier to medical care, and behavioral interventions may be a solution. This study evaluates the effectiveness of a brief intervention to decrease procedural distress during an EEG. We hypothesized that children and parents who received psychoeducation and distraction interventions would exhibit less anxiety and distress during an EEG procedure, as compared to those receiving standard care, and this would not add to EEG duration. One hundred and thirty-nine children (0-6 years) and their parents referred for routine EEGs were enrolled. Data were analyzed separately for both infants and children due to differences in the presentation of psychoeducational materials. Results demonstrated less parental anxiety and less distress vocalizations during the EEG. Interestingly, the intervention did not increase the duration of the EEG. While the data suggest positive effects, study limitations raise more questions as to the feasibility and impact of psychoeducation and distraction interventions with extended medical procedures.

Direct care staff and parents'/legal guardians' perspectives on end-of-life care in a long-term care facility for medically fragile and intellectually disabled pediatric and young adult residents.

OBJECTIVE: Children and young adults with severe disabilities and their families are faced with enormous challenges throughout the lifespan, including admitting the child to a long-term care facility (LTCF) and making end-of-life (EOL) care decisions. While children are residents of these specialized LTCF, the majority of their daily care, even up until death, is provided by nursing aides or habilitation aides (HAs) with limited training and educational backgrounds compared with other licensed healthcare providers. The purpose of this study was to determine the impact of a resident's EOL experience on the primary HAs and parents/guardians. METHOD: Thirty-five resident deaths occurred at Hattie Larlham Center for Children with Disabilities (HLCCD) between January 1, 2006 and February 28, 2009. The HAs and parents/legal guardians were identified for each death and invited to complete three surveys per resident (FAMCARE, Impact of Events Scale (IES)-revised, and Perspective on End-of-Life Care) to assess their experience. There were 112 surveys mailed to 62 HAs and 47 surveys mailed to 47 parents. RESULTS: Forty-two surveys were returned from 18/62 HAs (response rate 29%) and 11/47 parents/legal guardians completed the surveys (response rate 23%). The FAMCARE survey found that parents were more satisfied with the EOL care than were the HAs. The IES-revised found no difference in traumatic responses from either group. Comments from the Perspective on End-of-Life Care survey were analyzed qualitatively for common themes including pain control, respect, decision making, environmental needs, resources, and support. SIGNIFICANCE OF RESULTS: Because of a low response rate, it was difficult to draw significant conclusions; however, several interesting trends were noted regarding the number of deaths HAs experienced, satisfaction with care, and distress. The special needs of this population and their caregivers can provide crucial insights into interventions (e.g. chaplaincy support, debriefings, anticipatory counseling, environmental changes) that might be of benefit for any caregiver or parent of a child with a long-term, chronic condition, particularly involving developmental disability.

Functionally relevant physical exercises as an objective measure of clinical improvement in pediatric chronic pain.

PURPOSE: This exploratory study demonstrates the application of functionally relevant physical exercises (FRPE) to objectively assess physical functioning among children with chronic pain. Intensive interdisciplinary pain treatment (IIPT) focuses on functional improvements as a primary outcome. FRPEs aim to enhance clinical assessments and monitoring by providing relevant data for physical and occupational therapies. METHODS: Children enrolled in three weeks of IIPT provided data for study. They completed two self-report measures of functioning (Lower Extremity Functioning Scale [LEFS] and Upper Extremity Functioning Index [UEFI]), measure of pain intensity, and six separate FRPEs (box carry, box lifts, floor to stand, sit to stand, step ups, and modified six-minute walk test). Data from 207 participants aged 8-20 years old were analyzed. RESULTS: Upon admission, over 91% of children could perform each FRPE at some level to provide clinicians with a baseline assessment of functional strength. Following IIPT, all children were able to complete FRPEs. Overall, children reported statistically significant gains in functioning on all subjective reports and FRPEs (p's < 0.001). Spearman correlations demonstrated that LEFS and UEFI were weakly to moderately correlated to all FRPEs at admission (r's between.43-.64, p's < 0.001 and.36-.50, p's < 0.01 respectively). Correlations between all subjective and objective measures were comparatively lower at discharge. CONCLUSION: FRPEs appear to serve as good objective measures of strength and mobility for children with chronic pain, measuring variability across patients and change over time, which is unique from subjective data gathered via self-report. Due to face validity and objective measurement of functioning, from a clinical practice perspective, FRPEs provide meaningful information to support initial assessment, treatment planning, and patient monitoring. This study offers initial support for a novel measurement method that is easily administered and replicated to effectively measure functional improvement in children with chronic pain.

Biofeedback in pediatric populations: a systematic review and meta-analysis of treatment outcomes.

Biofeedback is commonly used for both pediatric and adult patients with a myriad of diagnoses in clinical settings. The majority of previous research has focused on the use of biofeedback in adults, with only a small body of literature examining the usefulness of biofeedback in treating children. The current systematic review and meta-analysis seeks to quantitatively examine the usefulness of biofeedback in addressing pediatric conditions. A systematic review of biofeedback interventions in children was conducted using four databases (Ovid MEDLINE, EMBASE, PsycINFO, and Cochrane CENTRAL). Outcomes included changes in symptoms of associated conditions or changes in physiological functioning. Out of 3,128 identified articles, 23 studies (with 24 effect sizes) were eligible for inclusion in the meta-analysis. Using a random effects model, the overall effect of pediatric biofeedback was statistically significant with a large effect size. Despite the large effect size, general study quality was low, limiting interpretation of findings. Despite widespread clinical use of biofeedback in pediatric populations, research is still limited concerning the efficacy of biofeedback in children. While findings suggest potential positive effects of biofeedback to address pediatric conditions, high-quality studies are necessary to fully support the use of biofeedback in children.

It takes two: Parent functioning within the pediatric chronic pain experience and interdisciplinary rehabilitation treatment.

OBJECTIVES: The present study aims to examine relationships between parental behavior and cognition and treatment outcomes in children enrolled in an intensive interdisciplinary pain rehabilitation program. RESEARCH METHOD: 670 consecutive referrals of children with chronic pain were enrolled in a clinical database registry from 2009 to 2014. Participants and their parents completed measures of physical and psychosocial functioning, and pain-related severity ratings. Data were taken at three time points: admission (N = 670), discharge (N = 504), and 6-month posttreatment (N = 110), although only complete data from 82 participants was used for final analyses. RESULTS: Both children and parents alike reported significant improvement in functioning, both at discharge and 6 months posttreatment. Parent functioning showed weak to moderate associations with child functioning, with stronger correlations at 6 months posttreatment. Regression analyses demonstrated that changes in parent functioning predicted child functioning and report of pain at 6 months. CONCLUSIONS: Parents are an integral part of a child's pain experience and associated disability. An improvement in parent functioning in the course of chronic pain rehabilitation is linked with functional gains in the child. Future research and clinical programming should target the role of parents in pediatric chronic pain interventions in order to optimize both child and family functioning. (PsycINFO Database Record

Behavioral Treatment for Headaches in Children: A Practical Guide for the Child Psychologist.

Headache is a highly prevalent condition and is the leading cause for school absences. Despite the rich literature supporting behavioral treatments for headache, many child psychologists mistakenly perceive that they lack appropriate training to treat children with headache. Likewise, many physicians feel underprepared to refer the child for behavioral treatments. This article serves as a primer, providing tools for the general child psychologist or mental health provider by answering frequently asked questions. First, we provide a concise background on pathophysiology and medical care for headache. We then detail aspects of behavioral interventions for headache, including a case example. We included a limited list of up-to-date references most relevant to the child psychologist who does not treat headache on a regular basis to support further reading. By reviewing this primer, local mental health professionals can provide children with headache access to high-quality, evidence-based clinical care closer to home.

Physical and occupational therapy outcomes: Adolescents' change in functional abilities using objective measures and self-report.

PURPOSE: This study evaluates the clinical usefulness of patient-rated and objective measures to identify physically-oriented functional changes after an intensive chronic pain program in a pediatric setting. Past studies have demonstrated the importance of adolescents' perception of their abilities and measurement tools used for rehabilitation outcomes within physical and occupational therapy; however, these tools used are not often easily utilized or have not been examined with a pediatric chronic pain population. In chronic pain rehabilitation, it is important to have a primary focus on functional improvement not on pain reduction as a leading outcome. This study examines how both self-report and objective physical activity measures can be meaningful constructs and can be used as reliable outcome measures. It was hypothesized that adolescents completing an interdisciplinary pain rehabilitation program would report functional gains from admission to discharge, and that perceived gains in physical ability would be associated with objective physical activities. Further, it was hypothesized that gains in functioning would be associated with mild pain reduction. METHODS: Data from 78 children and adolescents with chronic pain that participated in an intensive multidisciplinary treatment program completed self-report measures including the Lower Extremity Functional Scale (LEFS), Upper Extremity Functional Index (UEFI). In addition, adolescents were objectively monitored for repetitions of selected physical activities for 1min intervals. RESULTS: Data demonstrated significant gains in all measures of functioning during the program. Correlations between self-report and objective outcomes suggest they are measuring similar yet distinct factors. CONCLUSIONS: The LEFS, UEFI, and objective exercises provide a meaningful way to track progress in pediatric chronic pain rehabilitation. Despite similarities, they appear to track separate but related aspects of rehabilitation and capture important short-term response to rehabilitation. Both measures appear distinct from pain as an outcome. These findings increase our understanding of rehabilitation practices provide opportunities to promote clinical improvement in pediatric pain. IMPLICATIONS: The use of self-report measures along with objective measures can help therapists gain understanding in regards to a patient's insight and how that may impact their overall outcome compared to the use of a single outcome measure. Viewing these rated measures at any point in the rehabilitation process can be useful to facilitate discussion about challenges they can identify and how therapies can facilitate improvement and functional gains.

Cognitive-behavioral interventions for physical symptom management in pediatric palliative medicine.

The alleviation of symptoms, with the ultimate intention of improvement of quality of life, is a fundamental component of pediatric palliative medi-cine. Psychological factors can exacerbate physical symptoms or influence the perception of symptoms in children with advanced disease. Cognitive-behavioral interventions have yielded positive outcomes for the management of symptoms across various disease populations. There is a paucity of evidence specific to the application of these interventions in pediatric palliation, although evidence-based treatments developed through investigation of other disease populations can be applied in pediatric palliation. Children tend to be receptive to these noninvasive interventions, which can decrease fear and anxiety, increase self-efficacy and sense of control, and improve overall coping. Continued investigation into the use of these interventions in pediatric palliation is encouraged.

The influence of anxiety reduction on clinical response to pediatric chronic pain rehabilitation.

OBJECTIVES: This study investigates the relationship between anxiety reduction and functional outcomes in children and adolescents receiving intensive interdisciplinary rehabilitation services for chronic pain (CP). Specifically, we evaluated whether: (1) anxiety changes over the course of treatment; (2) anxiety covaries with functional outcomes to rehabilitation; and (3) change in anxiety predicts change in functional outcomes from rehabilitation for CP. Using 3 separate measures assessing anxiety-related constructs, we hypothesized that anxiety would be associated with functioning, both before and following intensive rehabilitation for CP. Further, we hypothesized that a decrease in anxiety-related symptoms following rehabilitation would predict a positive change in functional outcomes. MATERIALS AND METHODS: Our sample consisted of 119 children and adolescents treated for CP in an interdisciplinary rehabilitation program between 2007 and 2012. Children completed 3 measures related to anxiety (general anxiety, pain-specific anxiety, pain catastrophizing) and 2 functional outcome measures (eg, Bath Adolescent Pain Questionnaire, PedsQL) as part of clinical care. RESULTS: Measures of anxiety-related constructs were significantly correlated with measures of impairment and functioning, both at admission and at 1-month postdischarge. Regression analyses demonstrated that, after controlling for age, sex, and pain level at admission, a decrease in anxiety significantly predicted between 14% and 40% unique variance in functional outcomes. DISCUSSION: The findings of this study support existing research on anxiety and CP, specifically the relationship between anxiety and pain-related disability. This study also supports the benefit of intensive interdisciplinary rehabilitation for both reducing anxiety and increasing functional outcomes, suggesting a possible link in children's response to intervention. Study limitations and future directions for related research are discussed.

Chronic pain in children and adolescents: 24-42 month outcomes of an inpatient/day hospital interdisciplinary pain rehabilitation program.

PURPOSE: The purpose of this research was to describe 24-42 month outcomes of a combined inpatient/day hospital interdisciplinary pain rehabilitation program for children and adolescents with chronic pain and functional disability. METHODS: One-hundred-seventy-three children and adolescents (mean age=15.1 years, SD=2.5) were treated in the three-week program. Mixed effects regression models (MERM) examined changes over time in pain ratings (0-10), school days missed by children and work days missed by parents in the preceding week, and the number of days hospitalized in the preceding month. RESULTS: Participants reported a significant decline in pain from admission to 24-42 month follow-up. The largest declines in pain occurred from discharge to 1-month follow-up (6.20 vs. 4.81 on a 0-10 numerical rating scale) and from 12 months to 24-42 month follow-up (4.90 vs. 3.56). Two distinct trajectories of treatment response were identified using growth mixture modeling: children with initially high pain ratings exhibited large reductions in pain ratings, while those with lower pain ratings at admission showed minimal reductions. Treatment resulted in significant reductions in school and work days missed and the number of days hospitalized (all p's < 0.001), with reductions evident at 1-month follow-up and maintained through 24-42 month follow-up. CONCLUSIONS: These results suggest that interdisciplinary pain rehabilitation is a promising approach to chronic pain and associated disability in children, with enduring improvements found 24-42 months following program completion. Distinct trajectories of treatment response were identified.

Behavioral training for increasing preschool children's adherence with positive airway pressure: a preliminary study.

Behavioral training was implemented to increase adherence with positive airway pressure (PAP) in 4 preschool children. The training employed distraction, counterconditioning, graduated exposure, differential reinforcement, and escape extinction. A non-concurrent multiple baseline experimental design was used to demonstrate program effects. Initially, the children displayed distress and escape-avoidance behavior when PAP was attempted. With training, all 4 children tolerated PAP while sleeping for age appropriate durations. For the 3 children with home follow-up data, the parents maintained benefits. The results are discussed in relation to behavior principles, child health, and common barriers to PAP adherence.